Post surgery update

3 months after my 2009 surgery and I feel okay.

I’m having a difficult time accepting that 3 MRI’s which showed the tumor not only still there but growing were mishandled and because of that I had over a year of misery. Anger and depression are dominating me but I’m working on it.

Headaches, odd unexplained pains and near constant nausea are gone. Thank God. Less fatigue, it's great to walk across a room and not be exhausted but it still dogs me. I feel like I'm improving a baby step at a time. I'm walking daily, reached my goal of a mile then Chris brought home the flu.

The doctors and my poor husband urge patience. That's hard. I want to be surging through life, completing all the projects left unfinished over the last years because I’ve been too tired RIGHT NOW. Instead, ever so blessed slowly I complete something.

I missed my April appointment but have the results of my 3 month follow up visit. My hormones all came in within ‘normal’ limits. My T4 is still the same low ‘normal’ and will continue to be watched.

The MRI revealed they weren't able to remove all the tumor, a small bit couldn’t be removed because it’s by the carotid artery. However they relieved my optic nerve and my vision exam last month shows improvement.

Whenever even a few cells of a pituitary tumor remains it will grow, the question is how fast. There is nothing to do but wait until November when my next MRI will measure the growth. Pituitary tumors are usually very slow growing however mine grew aggressively last time so that's little comfort. If it's growing aggressive again they may have me undergo radiation. Since I’m only 42, and radiation would kill not only the tumor but also the pituitary AND that would mean replacing all the hormones it produces for the rest of my life, we hope it’s not.

Dr. Delashaw said it could also grow so slow after ten years he'll get bored and won't even bother to monitor me. I'm hoping I bore the hell out of him.

First post surgery appoinment March 2009

My cortisol function tested normal which is good news Testing for all other hormones has to wait until my mid April appointment, pituitary still swollen from surgery. Pathology on tissue revealed it was benign and negative for hormones which again confirms it's non-functioning.

So I asked the nice physician's assistant why I was told in the hospital I might be put on medication. She brought up the 2007 report and allowed us to read it. It basically said the tissue then had some cells with a variegated positive which she explained meant it had some prolactin but not the concentrated amounts a prolactinoma would have. So it IS non functioning and there is no medication I can take to suppress growth. I'm glad we got that straightened out.

Then asked about my low normal T4. She explained that although my level is much lower than it had been, I'm functioning well enough that it doesn't justify risking the side effects of medication to raise it at this point. If my health declines and over time the low normal result remains consistent then taking action may be considered. Man it felt good to have questions reasonably and respectfully answered.

We were cautioned surgery could've changed everything or nothing. So I'm taking each day as it comes and hoping for the best. The next round of tests are in April.

My hospital stay

My hospital stay was okay. Nurses over all were pretty cool, Doctors however were hit and miss. Since OHSU is a teaching hospital seemed like there were people popping in and out all the time and because of the fluid leak, my blood had to be drawn every four hours. I'm bruised from hands to elbows.

Sunday morning interns didn't arrive to remove the drain and nasal packing until the afternoon nurse demanded action. It took less then ten minutes to remove both and immediately my headache lessened. However since it was too late by that time to be released. Grrr.

Then one of the endocrine doctors popping in to say that I might have to go on medication. Confused because I'd been told medication wouldn't work for my type of tumor I questioned that. The guy stalked over to the computer where they'd been entering my vital signs and brought my record. There was a old report from 2007 that said last time my tumor tissue tested positive for prolactin.

What?

I started to explain what Dr. Delashaw had told us. The man interrupted, "if you’ll let me speak". Startled by his rudeness I fell silent. He made a few remarks on how medication works on prolactinomas then left. A good thing because though I was still on a lot of pain medication and weak from surgery my sweet, even tempered husband was only seconds from tossing him out.

An hour later my endocrinologist came in, said about the same thing and we just stared at her wondering if somehow we'd misunderstood in January. I decided then to ask about one of my hormones that was low 'normal' and she gave me a lecture on how giving medication when someone was ‘normal’ would lead to other problems. This was a complete 180 from her attitude during my pre surgery appointment when she assured us everyone’s normal was different, her focus wouldn't be on numbers but making me feel well. To my utter embarrassment, I started to cry and luckily she left.

Chris comforted me and after a couple moments I regained composure. We set aside our confusion, deliberately focusing on my recovery. We'll demand clarification on my follow up visit when I'm stronger.